Mary Anderlik Majumder, JD, PhD and Christi J. Guerrini, JD
Amendments to the Common Rule and Health Insurance Portability and Accountability Act (HIPAA) raise questions about broad consent and sale of health data.
AMA J Ethics. 2016;18(3):288-298. doi:
10.1001/journalofethics.2016.18.3.pfor5-1603.
Patients can now easily view their health records, so clinicians must consider a reader’s interpretation of how they convey sensitive personal health information. What might this mean for ethics consultants?
AMA J Ethics. 2020;22(9):E784-791. doi:
10.1001/amajethics.2020.784.
The question that comes to mind when one considers the risks of a clinical trial is, “Why would anyone agree to participate?” Interviews with trial volunteers and their family members make clear that often it is the appeal of discovering something new and unknown.
Rebekah Davis Reed, PhD, JD and Erik L. Antonsen, PhD, MD
Though the National Aeronautics and Space Administration’s collection of disaggregated genetic data for occupational surveillance and research raises numerous privacy concerns, the Genetic Information Nondiscrimination Act of 2008 allows genetic information to be used to develop personal pharmaceuticals.
AMA J Ethics. 2018;20(9):E849-856. doi:
10.1001/amajethics.2018.849.
Emily L. Evans, PhD, MPH and Danielle Whicher, PhD, MHS
Clinical decision support systems leverage data generated in the course of standard clinical care to improve clinical practice. They need to ensure privacy and quality of patients’ data, but must also allow queries of electronic health records.
AMA J Ethics. 2018;20(9):E857-863. doi:
10.1001/amajethics.2018.857.
Cynthia E. Schairer, PhD, Caryn Kseniya Rubanovich, MS, and Cinnamon S. Bloss, PhD
Questions about data privacy need to be addressed when research institutions negotiate with companies developing mobile health applications. Commercial terms of use and data sharing notifications should be reviewed before use in human subject research settings.
AMA J Ethics. 2018;20(9):E864-872. doi:
10.1001/amajethics.2018.864.
An emerging medical ethics issue is whether to delay posting pathology reports to electronic health records (EHR) to allow clinicians time to follow up.
AMA J Ethics. 2016;18(8):826-832. doi:
10.1001/journalofethics.2016.18.8.pfor1-1608.